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Saturday, August 30, 2014

For the second year in a row I was blessed to be able to volunteer at Camp Communicate held by the

Pine Tree Society in Maine every year. Camp Communicate is a three day family retreat welcoming AAC users ages 8-21 and their caregivers and siblings (and in some cases teachers and speech therapists). AAC users and siblings participate in camp activities like arts and crafts, swimming, boating and outdoor games. Parents and other adults participate in workshops about augmentative communication, self care and other issues related to AAC and family. Special events for everyone include things like a visit from the ice cream truck, campfires, fireworks and a dance. Just like last year it was an amazing, awe-inspiring long weekend. Also just like last year I am fairly certain I learned as much, if not more, than any of the campers or caregivers. Here the stories of some of the lessons I learned:

A mom who had been to the presentation I gave the previous year hugged me hello and told me that something I said had stuck with her and impacted her family's life. I prepared myself for a compliment. "Turn it on," she said, "you told us to turn it (her son's speech device) on." Not quite what I was expecting to hear! Lesson learned - respecting families and their journeys means meeting them where they are and that means acknowledging that even turning on a speech device can be a big step.

My wonderful friend and Drama Therapist in her final year of training, Lauren, and I hosted drama therapy sessions for each group. I had deliberately given given Lauren very little detailed information on complex communication needs, though I had given her lots of information on how speech devices work and how presumption of competence is the key to our work in the field. My theory was that because Lauren had not worked with this population before her expectations would be higher if she relied on on her drama therapy training and not what I could summarize. In our sessions Lauren led two warm up activities. I silently had my doubts about one of them because nearly twenty years in this field had me mind-washed to believe that child and teens with complex communication needs do not excel at pretend or imaginative play. I was so wrong. In every group, every single camper beautifully engaged with the activities and pretended and imagined, using their speech devices to describe and label their acting. Lesson learned - the only limits to imagination and pretend play that exist for complex communicators is that which we, the adults and professionals, put on them.

At the camp dance (there is nothing like dances that include a majority of people with multiple disabilities - more joy and less drama than any other dance on the planet) I made sure to spend time with each of the campers I knew well. At one point I had been spending time with a young man I know very, very well - he was my student two years ago and has been at camp the past two summers. He is an AAC user who has a Tobii eye gaze tracking system. He also looks at things and people in his environment to communicate. I noticed he was twisting around to look at the beautiful young woman that was his assigned one-to-one for the weekend. After having her move where he could see her and talk to her I moved on to visiting with another camper. A few minutes later his mom and sister called to me. He had opened an new email and had written, "Dear Kate, I miss you" and was attempting to send it. I laughed and called to him that I was right behind him. Lesson learned - the right to communication encompasses not just AAC for face-to-face interactions but the ability to communicate using text message, e-mail and video chat. (Something that Medicare is trying to end. Please sign this petition and contact your congress person to keep access to ALL means of communication available to AAC users.)

In addition to the drama therapy games we played in our drama session, we also rehearsed for a special performance for the parents and caregivers and made music videos. The special performance was a mash-up of Shambala by Three Dog Night and This Little Light of Mine. Each camper had to use their speech device to identify one thing he or she was good at and then we sang about it. Hearing each camper share what he or she has a special talent for was enlightening for so many reasons. Some campers focused on their special interests (wearing hats, football), others focused on what they know makes others happy (their smile) and still others focused on what they enjoy (cooking, flirting). Not one said, "functional academics", "life skills", "zipping my coat", "not interrupting", "conversational turn taking" or any of the things we harp on in IEPs. Lesson learned - every child gets to define what he or she is good at and what has meaning to him or her and we would do well to take our lead from them.

Much like the weekend before when I was privileged to see Mary Louise Bertram speak on AAC and Angelman Syndrome a few people told me they thought I wouldn't learn much from the experience of volunteering at AAC camp. And just like with that lecture they were wrong. Lesson learned: there is always more you can learn.

Camp Communicate in their end of camp performance "Letting Our Light Shine":

Each camper worked on this in drama therapy and then a dress rehearsal before this performance for their parents, caregivers and siblings. Every student choose their own statement on how their light shines using his or her speech device.

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